Just over three weeks ago Imp had his operation on his hip, we were worried and after a prolonged stay in hospital (5 days instead of 2/3) he has made good progress.
A fortnight in we visited the nurse at the GP’s for a wound check, they were happy with his progress, removed the steri strips and for the first time I could see the actual incision. It wasn’t as red as I thought and as all of his stitches are internal there was nothing scary about it. He was also relieved to see this as a lot of his anxiety has been around fear of the unknown and a big hole in his leg!
This week is half term but last week was enrichment week at school and Imp was able to attend for three of the days. He had a great time at the Lego workshop, the zoo visit and the Sir Teachalot Egyptian day as well as the social side of seeing his friends and engaging in conversations that didn’t revolve around having to move him, going to the toilet or eating. We have been out and about to the local shops and with the dogs as well.
We have discovered that people react to him in a few ways, they either ignore him completely, leap out of the way as if his plaster cast is contagious, bend down and talk to him as if he is an idiot, look away and fidget because they feel uncomfortable around him or, thank goodness, treat him like he is him! He may be in a wheelchair but he isn’t deaf, or contagious or invisible! Perhaps the worst habit is people talking about him as if he isn’t there. Imp has started to realise this for himself and has on occasion interrupted and spoken for himself and whilst I don’t allow him to be rude I am glad he is assuring himself and speaking for himself, as he has such a good understanding of what is going on he actually explains things better than me, and as he says, no-one else knows exactly how I’m feeling!
Most of his peers have accepted him as he is and arguments have broken out about who will push him around! There are a few who are reluctant to approach, more for fear of hurting him, although once I have explained he is more likely to hurt them if he runs them over then they usually feel better about him. Indeed it is adults that seem to react the worst, even staring, he and I are happy to answer questions and much prefer talking to staring. It has made me admire those who cope with long term of life long disability much more, I have only had a small dose of the ignorance of some people who cannot process those who are outside the ‘normal’ mode and that has been more than enough.
From a practical point of view we are coping well, we have devised a way of getting in and out of the car, he is beginning to be able to scoot around on the floor and transferring from place to place is getting easier and easier. My initial trepidation about being able to move him and get him where he needs to be has all but evaporated. Of course it takes extra time to get him to places, we can only fit him and the girls in the car so as a family of five we need two cars to get around or we tend to walk or stay at home. I have numerous grazes from his plaster cast and wheelchair having fought to secure him and it in the car but the smiles of achievement when he does something, gets to join in with something or even just has a few minutes out of the house make it all worthwhile.
Rain has played havoc with plans as he has anxieties about getting his cast wet after someone told him it would tun into play -do if he got it wet, but bin bags have proven to be a cost-effective way of going out in light rain and him not melting! I can’t pretend there haven’t been moments of frustration and annoyance both from him and me but each day is a day nearer to being rid of the cast, of course it isn’t a magic wand and it won’t cure his problem overnight but it will help.
Next week is his birthday and he is a bit upset about being in cast for it, we have bought lots of Lego which we hope he’ll like and a Kindle and he is off to Brands Hatch for Speedfest, something I had booked before we knew he needed his operation. I was worried when I found out about his op and thought that he wouldn’t be able to go but a quick call and his ticket was changed to allow him access to a grandstand seat with disabled access. We still don’t know if he can go to school for the next two weeks and from that point of view things have been awkward.
Imp and I both want to be as normal as possible, for me work has not been possible as i have been caring for him but I am hoping that if he returns to school I can return to work as we will both be based in the same place but we’ll see! Whilst we are not really counting down at the moment we will be once his birthday next week has been and gone and I am sure that as the day gets nearer excitement will start to build rather than the trepidation that took over before the operation. Of course there will be a certain amount of worry, there will still be a number of hurdles to jump over, the x-ray, the removal of the cast itself and the remaining recovery time be it on crutches, in a less cumbersome wheelchair or the physiotherapy and hydrotherapy but we are beginning to feel we are up to the challenge.
A final word has to go to the parents and supporters of the Perthes Association as the parents on there are very encouraging as well as a source of information. Imp is looking forward to the summer get together as in his words ‘I can meet people like me!’ It struck me how aware he must be of how different he is at the moment and how others are looking at him, it also struck me that while I have been suffering with cabin fever I have managed to escape for a run with Hpops and so on, he hasn’t been so lucky and so I pay tribute to his resilience and praise just how well he has coped with being so restricted. As much as I hate seeing him go through this I am also incredibly proud of him and as well as improved biceps he has shown me what a strong person he is! Well done Imp!
